IJLCD: Collaborative working with parents to support children with Developmental Language Disorder (DLD)

How do speech and language therapists collaborate effectively with parents of children with Developmental Language Disorder (DLD)? Firstly, speech and language therapists need to understand, 'What are their needs?' In this podcast we talk with lead researcher Inge Klatte, of the Research Center for Healthy and Sustainable Living, HU University of Applied Sciences Utrecht, and one of the parents involved in this study, Astrid van Gessel, who has two children with DLD and also works at a special needs school.
 

The paper is:
Collaborative working in speech and language therapy for children with DLD—What are parents’ needs?’ 

Inge S. Klatte, Manon Bloemen, Annemieke de Groot, Tina C. Mantel, Marjolijn Ketelaar, Ellen Gerrits

First published: 
16 September 2023

 
Useful resources:

The following papers are open access.

Network Collaboration for Communication: Collaboration for Communication Network | Collaboration for Communication Network | Newcastle University (ncl.ac.uk)

Link to the paper ‘Collaborative working in speech and language therapy for children with DLD—What are parents’ needs?’:  Collaborative working in speech and language therapy for children with DLD—What are parents’ needs? - Klatte - 2024 - International Journal of Language & Communication Disorders - Wiley Online Library 

Link to the systematic review I mention in the podcast: Collaboration: How does it work according to therapists and parents of young children? A systematic review - Klatte - 2024 - Child: Care, Health and Development - Wiley Online Library

Also see RCSLT's Developmental Language Disorder overview: https://www.rcslt.org/speech-and-language-therapy/clinical-information/developmental-language-disorder/


NOTES:
For RCSLT members, access this paper by navigating to the IJLCD website from our A-Z journals list here. Also, if you would like further information on the research terms used in the podcast, or many other aspects of research design, please navigate to the ‘Sage Research Methods’ collection from the Research Methods page of the RCSLT website’.


The interview is conducted by Jacques Strauss, freelance producer, on behalf of The Royal College of Speech and Language Therapists.

Please be aware that the views expressed are those of the guests and not the RCSLT.

Please be aware that the views expressed are those of the guests and not the RCSLT.

Please do take a few moments to respond to our podcast survey: uk.surveymonkey.com/r/LG5HC3R

Transcript

Transcript Date: 

19 September 2024 

Speaker Key (delete/anonymise if not required): 

HOST:                         JACQUES STRAUSS 

INGA:                          INGA KLATTE

ASTRID:                      ASTRID VAN GESSEL

MUSIC PLAYS: 0:00:00-0:00:05 

HOST:                         0:00:06 Welcome to another RCSLT podcast. My name is Jacques Strauss. This is an IJLCD edition of the podcast in which we talk to authors of articles in the International Journal of Language and Communication Disorders about research that we think would be of interest to the wider SLT community. 

In this episode, we are talking about an article entitled ‘Collaborative working in speech and language therapy for children with DLD: What are parents’ needs?’ One of our guests, Inga, is an SLT and lead author of this article, and the other, Astrid, a special needs teacher and parent of two boys diagnosed with DLD. 

I started by asking them to introduce themselves. 

INGA:                          0:00:51 My name is Inga [inaudible 0:00:52] and I work at the [inaudible 0:00:53] University of Applied Sciences in Utrecht in the Netherlands, at a research group speech and language therapy participation through communication, and currently, I’m finishing my PhD on collaboration between parents and SLTs. And I’m a mother myself of two children. 

ASTRID:                      0:01:11 My name is Astrid van Gessel. I’m a mother of two boys, both diagnosed, and I work as a school principal at a school for children with special needs. 

HOST:                         0:01:24 Starting with you, Inga, what was the clinical question you were trying to answer? 

INGA:                          0:01:28 I would like to go a few years back for that to my master thesis, which I conducted in Bristol in the UK, under supervision of Professor Sue Roulestone. She asked me to look into the way SLTs work and deliver parent-child interaction therapy, because all SLTs deliver it a bit different, but what are the working elements of PCIT? 

So, I interviewed SLTs about that, and interestingly, they told me that they find it very challenging to engage parents. And for me, that was actually the starting point of the research that we have conducted in this paper as well. 

We started a network – international network on collaboration between SLTs and parents – and I started my PhD on the subject. Because we see that in… well, in the Netherlands, but also internationally – more internationally – we are not used to work according to the family-centered care principles. We find it, as SLTs, very important to work with parents, but actually we work most of the times via parents and not spend much time on talking to parents about their wishes, etc., which is key in family-centered care. And collaboration is about taking time for parents to discuss their feelings and to conduct shared goals, etc. 

So, in order to change practice towards that family-centered care and towards collaborating, we need to know what the needs of parents are in this topic. 

HOST:                         0:03:05 Thanks, Inga. So, the clinical research topic is: what are the needs of parents when treating DLD? 

So Astrid, this seems like a good time to turn to you, and I wonder if you wouldn’t mind telling us a little more about your story and that of your boys. 

ASTRID:                      0:03:23 I have two boys, and when the eldest was I think about three years old, I thought, he doesn’t speak very well, and maybe there is something wrong. I went to an SLT and they did some research, and then he was diagnosed. And the first thing they said was, this is the diagnosis and that’s it – let’s start therapy. And then I went home and thought, yeah, but what does it really mean? I had no clue. 

Years later, the second one also started having words didn’t come out very well, other stuff, and I thought, I think [inaudible 0:04:14] the same path. He was very young. He wasn’t even two years old, but I just recognised things, so I went back to the SLT and we had the same thing again. 

But the second time was different, because I already knew what was going on and how to deal with it. But still, the second time have impact on us. And now they are 9 and 12 years old. Now I know what the impact is. Back then, I didn’t know. It was wonderful to have an SLT who told me what are the implications; what to expect for the future; what can you do to help your child? But also ask, what do you need as a parent? 

HOST:                         0:05:03 That’s really interesting. I mean, here in the UK, DLD is not very well understood. But you’re also a special needs educator – had you heard of DLD before your eldest son’s diagnosis? 

ASTRID:                      0:05:21 No! And I was actually shocked, because I didn’t know. I didn’t know a thing about it. When I asked people around me, especially in the schools where I worked, hardly anyone knew anything about it. And thankfully, I think now, years later, there is a lot of progress but it’s still a subject that not everyone knows about. 

HOST:                         0:05:45 Of course, we know that DLD is quite prevalent, affecting around 6-7% of children, so one or two children in every class. 

But Inga, I wonder if you could tell us a little more about the existing research into the need for parents to be involved, or for SLTs to collaborate with parents. 

INGA:                          0:06:10 There is research around this topic, and then [inaudible 0:06:14] used the word ‘involvement’. Other words were used, like ‘involvement’, ‘engagement’, other relevant words as well. 

Together with our network, Collaboration for Communication, we wrote a discussion paper about the complexity of collaboration and the suggestion to use collaboration instead of words like ‘involvement’. It wasn’t our suggestion. There was a there was a different source suggesting that, but we were saying, yes, we agree with this suggestion. And because engagement and involvement is sort of a one way manner of saying, I would like to have the parent engage with my plan, with my activities and collaboration implies that you work together as partners and share your expertise in helping the child. And our parent panel during this project said actually the same: please use collaboration. But in the Netherlands, yeah, most SLTs still talk about engagement. But I think that’s a really good start to use different words that stimulate us as SLTs to approach parents in a different way. 

HOST:                         0:07:34 Astrid, how did you react to this idea of collaboration as opposed to engagement or involvement? 

ASTRID:                      0:07:45 I think the SLT is only involved such a short time in a child’s life, in your parents’ life. So they can really teach you things, and they can teach the child things, they can do a lot, but it’s only for a short period and then you come home, literally! But you have to do it yourself. And that doesn’t mean that you’re a therapist. But it does mean that you have to work with the child every day during daily things. 

So, I think it is like a joint force together, but the parent has to do most of the work. 

HOST:                         0:08:28 Absolutely, yeah. Inga, I wonder if you can tell us a little more about how you went about undertaking this research. 

INGA:                          0:08:36 In this project, we interviewed 12 parents in total, and we asked a colleague who is a teacher, a lecturer in social work, to conduct the interviews. Because we thought when we do it as SLTs maybe parents will answer more in a social accepted way, instead of being more honest about their collaboration. 

In preparation of the interviews, we asked the parent panel to think about the topic list. During the analysis of the interviews, we asked the parent panel as well to read the transcripts and to discuss their thinking with us. 

Yeah, that really helped us to learn from parents about how they interpreted the data, and I think that helped us. They found different topics relevant maybe than we maybe did. I think, yeah, it was really helpful to do that together. 

HOST:                         0:09:36 Can you tell us a little more about why you were worried that that if SLTs were asking the questions that would somehow compromise the research. 

INGA:                          0:09:44 Yeah, so our colleague was a lecturer in social work. We were a bit anxious that if we are we were the interviewer about also challenging collaborations that parents have experienced, they might be not that open about their experiences.

HOST:                         0:10:07 Astrid, I see you nodding along. Do you recognise the anxiety there? 

ASTRID:                      0:10:14 Yeah, because it’s a bit vulnerable as a parent to talk about stuff that didn’t go as well, or as you thought it would be, and you have to tell another SLT about a colleague what you think they did wrong. That’s hard as a parent to admit. So, I was quite pleased that they did the interviews by someone else. 

HOST:                         0:10:41 And were you anxious about talking about your needs as opposed to your child’s needs? 

ASTRID:                      0:10:49 Yeah, at the start really, because I thought maybe it’s not normal that I have needs in this process. But thankfully, our SLT at the time really thought with us, and she also… and that really helped in this case was a parent of a child with DLD, so she knew how it felt, and she could say but it’s normal that you feel that way, and if you have any questions, just ask them. So, that really helped us. 

But I’ve also had experiences that were not that well. I also know that that you have a boundary then as a parent to talk about it and to ask questions. 

HOST:                         0:11:42 Inga, what were the key findings of the research you undertook? 

INGA:                          0:11:51 Actually what striked (sic) me during the interviews was that actually all parents still had questions about for me basic information. What is DLD? Does it go away? For how long will the therapy last? Because in the Netherlands we can… which is maybe a luxury thing, but we can… we have endless sessions. And yes, we do restriction because the health insurance pays attention to the number of sessions. But those basic questions were still there. And parents were… Yeah, that did strike me, actually. They felt they don’t have the time, or receive time and space to share the questions and share their thinking. I think for me, that was the most interesting part. 

And the other results about the importance of alignment to therapy… the alignment of the therapy to children’s needs and parents’ needs, that’s something that we already know. But still, parents share that it’s not always the case. 

ASTRID:                      0:12:59 I think the most shocking for me as a parent was to hear that there are so many parents who are hesitant to ask questions, whether it is a case of time or because they just don’t know how to ask the question or other reasons. But actually, all parents, I think, talk about that subject, but we don’t ask the questions. And then that’s really interesting, why don’t we do that? And why aren’t parents invited to ask a question? Yeah, maybe after the first diagnosis – do you have any questions? But later in time, that question doesn’t come back, and that’s interesting. 

INGA:                          0:13:48 Yeah, I must say that I believe that all SLTs ask the questions: do you have questions each session when they explain home assignments, etc. But I also know, based on the interviews of this paper, that parents do not know what questions are relevant. I do have a question, but it’s not about the topic that we are discussing now. Is the question silly? And I know that there’s another parent waiting in the waiting room and the time is over, so I don’t want to use the time of the following child. So, there are a couple of reasons. 

So, I think one of the key messages is rephrase your question to parents. Do not ask, do you have questions, but what kind of questions do you have? For example. It’s a very easy way of changing the way you approach parents. 

HOST:                         0:14:40 Great advice. The presumption should be that there are questions. And so, instead of saying, do you have questions, you should say, what questions do you have? 

Astrid, do you have any thoughts on this? 

ASTRID:                      0:15:01 As a parent, it’s different. I didn’t know what question to ask, but also when I got home that’s when the questions started to pop up. And I think it’s really important to know what to do with those questions. Can I write them down and ask them next time? Or can I send an email to the SLT? I think it’s important to tell parents there is time, we can make time to talk about this subject. 

INGA:                          0:15:35 Because this links what Astrid is saying and also what I was saying about the questioning is about the importance of empowering parents, and empowering means that parents have the right capabilities, the motivation. But it’s not just willing to but also believe in yourself that you’re able to join or to share your thoughts. And literature is already writing about, but this piece of paper is… the parents are confirming that. They say, I would like to know how to contribute; I need to know what you expect in order to share my thoughts, in order to join in, and of course, I need to trust the therapist; I need to feel capable of supporting my child. 

We recruited parents with a variety of how the collaboration went with SLTs. Do you know what I mean? 

HOST:                         0:16:31 Uh-huh. 

INGA:                          0:16:30 The collaboration went well. So, we wanted to talk to parents with a good collaboration with SLTs, and we wanted to talk to parents with sort of a challenging collaboration which was judged by SLTs. Because we recruited via SLTs. But actually, all parents we talked to were satisfied. 

A paper of [Inaudible 0:16:48] and [Morris 0:16:49] is very relevant to this topic, because satisfied parents are not the same as empowered parents. You can be satisfied, but you can have a passive compliance with all the decision SLTs make. And some SLTs might think, okay, this parent is satisfied, so our collaboration is going very well. But still, the parent has many questions, or doesn’t have a clue but thinks you’re the professional, go with it; I believe that it will work. But that’s not collaboration. 

So, I think that’s also a key message. Be aware of the importance of empowering parents and invest time in empowering parents. 

HOST:                         0:17:35 Astrid and Inga were keen to stress that collaboration does not necessarily mean that the parent or caregiver has to play a big role in the interventions, but that these decisions are jointly made – that if they take a step back, they’ve decided to do so in full knowledge with the therapist. 

I then asked: does the complexity of DLD as a diagnosis, both that it’s not well understood and not well known in general, as well as the broad range of possible impairment, affect the research? 

INGA:                          0:18:12 Yes and no, because I’ve written a systematic review on collaboration within the field of child rehabilitation, so rather than just speech and language therapy. And I read that these topics are very relevant, like collaboration and paying attention to parents’ needs, etc., is relevant to all parents with children with disabilities. 

But I also can imagine that when you have a child with cerebral palsy, all people know something about it. But still, I mean, CP – cerebral palsy – also can have a variety of characteristics in a child, I guess.

But DLD, we were just talking about it, is a sort of hidden disease, so you don’t see that the child has DLD. And as a parent, you constantly need to explain or need to defend, maybe, your child. But I guess that’s something that Astrid can explain a bit better than I can do. 

ASTRID:                      0:19:09 It’s affected us immensely, because the whole world, everyone around us, sees these normal children. You can’t see anything about them. But when we were in the supermarket and someone talked to us, they wouldn’t respond. And people tend to say to us, you can speak, you can say thank you, or well done, or whatever. And I always had to say, no, they can’t. It’s not that they won’t want to, it’s they just can’t do it at that time. 

And as a parent, you have to advocate for your children constantly, and not everyone understands that and takes that for granted, or will accept your answer. That’s okay, but you have to be prepared and you have to accept that it’s there, but you’re still a good parent. 

HOST:                         0:20:15 I think we’ve touched on this quite a bit, but I wonder if we can now be really explicit about what our recommendations are to SLTs.

INGA:                          0:20:27 Approach parents as parents and not as educators. I think that’s the main message. And I mean by that is like Astrid is now explaining that a huge impact on parents. Being the advocate of their child, it’s so important to ask parents how they are doing. I spoke to a lot of… well, I spoke to a lot of parents, but something that’s coming up regularly is that parents said, and then I met a therapist who asked how are you doing and that was gold. Yeah, I think that’s my main message. 

HOST:                         0:21:01 And Astrid, notwithstanding the fact that the NHS is under tremendous pressure, what should parents be asking? 

ASTRID:                      0:21:11 I think that the main message is to ask for time. To ask, can you listen to my story? Can you listen to what I need in our home with our child so your therapy can work even better? 

Imagine someone says to you, about you, or if you’re a parent, about your child, that the whole world is going to change instantly, and you don’t know the future, you don’t know what will happen. There is a way of helping, but we don’t know the outcome. What would you do? How would it feel for you? And I think that thought really helps with thinking about, if I’m not the SLT… if I was the parent or if it was about me, what would I do? What would I need? 

INGA:                          0:22:11 Yeah, I agree. We must underline that SLTs have the best intentions to help the child. And I think we need to add to help the parents as well. 

We are educated… well, in the Netherlands we are educated to work child-directed, so that means that we know how to support a child in the best way. And I think we are very good in that, and we’re very good in building a relationship with the child and also with the parents. But we do not learn how to collaborate with parents, and that’s very [complex 0:22:47]. So, I think that we should add that to the SLT education because, yeah, it’s complex. 

HOST:                         0:22:58 So Inga, what limitations are there in this research, and more importantly, what further research would you like to see?

INGA:                          0:23:07 The limitation of the study, I think the biggest one is that we have spoken to 12 parents but we also weren’t able to reach all the parents we would like to talk with – especially parents who were overwhelmed by all the stuff in daily life they conquer. But also, parents who were saying, no, I don’t want to talk about the difficulties of my child, or who were a bit cross about the collaboration. I think especially those parents. I mean, I want to know their needs because those needs weren’t met. So, yeah, I think that’s a limitation. 

And one of the reasons that we may have not reached them is because we try to… We recruited via the SLTs, the SLT practices, because they have a close link with parents. But in another study, in a future study, I would like to recruit parents more via [parents 0:24:07]. 

HOST:                         0:24:07 And Astrid, what would you like to see more of?

ASTRID:                      0:24:11 I think the school where Inga works does that already. Invite parents during education because that’s where you reach the future SLTs. And you already do that, Inga. Every year, I come around and I talk for an hour to students! 

But I think it can be way more than that. But it should be basic programme at every uni. 

INGA:                          0:24:47 May I add something? For future research, I would like to know more about how people from a diverse cultural background view the language development. So, what kind of views are there? And I know there’s already some literature, but not that much. And I think knowing how people view language development can influence also their willingness to join the therapy goals. Maybe they don’t fit how they view language development, and I think it’s very important that SLTs we know what the variety is of parental views on that. 

HOST:                         0:25:29 Thank you both for making time for us today, we really do appreciate it. 

Before we let you go, do you have any final thoughts to share?

INGA:                          0:25:39 Maybe one of the key messages, and we haven’t explicitly mentioned it, that what we can do as SLTs is emphasise parents’ expertise and invite them to share their expertise. 

ASTRID:                      0:25:53 I think ask parents about the story, their story, their child, and use that as an opening to find out more about how you can help them and the child. 

HOST:                         0:26:09 Well, that concludes another episode of the podcast. If you have any ideas for future episodes, please do get in touch. As always, we ask you to rate, review, and share the podcast with colleagues so that we can continue to advocate for SLTs, service users and their families in the UK and further afield, including the Netherlands. 

Until next time, keep well.

MUSIC PLAYS: 0:26:31